well it has been almost 3 years since i have updated my website about my son James.
Things were going really well the past 2 year, off all medication and going strong, until one day late last year i noticed a change in James arm. I told his specialist about my concerns and she said, she doesnt think it is coming back because usually if it was going to flare up again it would present in a different spot, not the same. 3 months passed and we returned still i believed that it was back, in the same spot as the first, it wasnt untill another 3 months passed that it spread over to his left arm that they took notice. Now sadly he is back on the meds. Absolutely hating the injection, hating them so much it makes me not want to give tem to him. I hate seeing the fear in his face when he sees the emla cream, knowing that it is injection day. We are waiting for a referal to see a dr about dealing with the fear of having a needle.
James still has a splint for his right hand, the movement and restrictions are getting worse despite the splint and exercises.
As a mother it devastates me every day that the dr wont say what will happen, it devastates me that i cant take it away and make it all better for him. But we have our heads held high, we will get through this and knowing that there are people out there who actually do understand what its like having to live with this and hearing from you helps me, so thank you. I will add some photos shortly to show the progression.
Well firstly let me say Happy New Year to you all. I hope that this year more and more people help support the Juvinile Scleroderma Foundation and learn more about this disease that our beautiful, innocent, brave and wonderful children have.
Now I know that I haven’t written for a long time, I am sorry about that. We have only had one Dr visit in that time and we have another at the end of Feb. I think I am going to hear the same thing as I heard the last time, stay on the Methotrexate, keep moving and exercising the joints and we will have to see how the growth goes. He can touch his thumb to his little finger which is most important. He is rebelling against wearing his splint, he will let me put it on sometimes but takes it off when i leave the room. I think he is just getting “sick” of wearing it, he hates injections and runs crying and hiding from me when it is time for it, i think he is at the point where he wants to stop, he keeps asking why. Once I was just so frustrated that I got angry, I know that it was wrong and I wasn’t even angry at him, I was angry that I had to do this and that why me ,why James, why did life deal us this? Getting angry didn’t help as I’m sure you know, now he hates it more and more. I hate doing it more and more as well.
I have put on a couple of picture to show how it is looking, now he is growing I can see the difference in the thickness and growth of his thumbs, I dont know if it is slower in growing or maybe has just stopped. Another waiting game, only it isnt really a game, it is James’ life.
Not a happy post to start the year, he is doing well and is back to school tomorrow to start Grade 1. He is excited and loved the school holidays but is ready to get back to school. All other health issues are fine and he is most of the time a happy kid. I am thankful for that. I am hoping to write more on Thursday, James wants me to come and tuck him into bed right now. Lets see how long the splint stays on tonight! Keeping our chins up. Thank you everyone for all your support
Well I went to see the nurse and she gave me plenty of things to help prepare me for doing the first injection on my own. I had a practice doll and everything, I practiced a few times with a water filled syringe and read the info and watched a video. So Tuesday came and James was so much calmer and relaxed, I had prepared it all in the kitchen after the EMLA was on and ready I just called him over and did it, I was nervous but strong. Knowing that he doesn’t feel it go in is a HUGE help. James just sat their and we put on his favourite song on the radio and did it. We put on a band-aid and he was off playing with his brother again! I am so glad that I did this, I wasn’t sure to begin with if this was the right thing to do, if I was strong enough to do this, but now I know that it is, I’m sure every week will be a little different and some times he might cry but now I know that I can do it and he can too. He is my brave soldier. We go back the the specialist in about a month and will keep updating as the weeks go on.
I have just gotten a part time job (Yay!) where the hours change each week so now I’m thinking about giving James his injections myself. I have spoken to my Dr and also his specialist and I am going to see a nurse who can show me the right way to do it. I must say that I am nervous about doing it but I feel that it is the best thing for us at this time. Although the Calm seemed to work for a couple of weeks James has started vomiting out of anticipation again at the Dr and I hate just waiting in the waiting room for half an hour if they are running late. I don’t think it is fair for James, it is just time he is waiting, knowing that he is waiting for an injection. If we do it at home we can just apply the EMLA and an hour later we can just do it. I have spoken to James about me doing it and he wasn’t keen to begin with but we have talked about it and he is willing to give me a go. I am just waiting to hear from the nurse to set up a time for me to come in and lean how to do it. I want James to see that I am comfortable in doing it, I don’t want to come across as nervous or frightened about it. Can anyone tell me what their first time was like? Is the first one the hardest? We see the specialist again in a month.
A couple of weeks ago at school James was hit in the thumb (of all places) by a basketball. The whole thumb was swollen and none of the joints could move at all. I was alarmed by this and of course went straight to the Dr and called his OT, the Dr said it was soft tissue damage and the OT said it was just because of the swelling that the joints didn’t move. After about 10 days the joint was moving a little better, I think it isn’t moving as much as it was but it is better than it was. At home every day we doing hand strengthening activities and also do things like playing with play doh and fine motor things like beading and bindeez. He wears a spint on his thumb every night. We only see the physio and OT once every 3 months, we do all the hard work at home every day.
Should hear back from the nurse tomorrow, will let you know how I go.
Well the past two weeks injections I have been giving James the Calm and it seems to be working. He hasnt been sick. Thank goodness. He really doesn’t like the smell of the alcohol swabs so the Dr is going to use something else. He still doesn’t like to have the jab but with the calm and EMLA cream he seems a little better with having it. We don’t go back to the specialist till the 13th Nov. I have been a little slack with thumb movements so I had better get back on track with that to give him the best outcome possible for him. He is doing really well at school. The weather is finally warming up so he can get outside and play. Hopefully the Calm will keep working for him!
After going to the Chemist and hearing from JSDmom, I have decided just to try a natural remedy called Calm. It is for stress and anxiety, the Chemist recommended it. So hopefully that will help with the vomiting and anxiety too. I will contact the Dr again and ask why she wanted him to try folic acid, maybe I heard wrong or something. Maybe she knows something that none of us know, she did say that vomiting from anxiety is hard to treat. Will see how the Calm goes. Fingers crossed!
The last two weeks at the Dr for James’ injections he has actually vomited. When we arrive there he gets a dry them moist mouth. We read books until we are called in and once we are in there James is so anxious he starts to feel sick and once the EMLA cream is wiped off and alcohol swab is done he just vomits. Poor little guy. So I called his specialist at the hospital and she suggested that we can try to take some folic acid. give it up to 24 hours before the injection time. So hopefully this will help. He has also had a few blood noses, in the night and today he had one at school. I will tell the Dr next week when we go about these. I try so hard to tell him how brave he is how proud I am and we always do something fun before and after the Dr visit. I feel so bad sometimes having to take him. Will see how the folic acid goes on settling the nausea.